My Cancer War

Monday, February 9, 2015

February 2015, marks 10-months of living with advanced Stage 4 Cancer. We have celebrated a ton of positive accomplishments after the initial prognosis was given just a few months to live. Erin and I are living as full lives best we can between procedures and setbacks. We cant thank our friends and family enough for all the support this past quarter. Even though the months were turbulent ones, they started out very positive with strong reports for my Oncologist that the new treatment of Abraxane & Avastin was working until recently. Then they found another brain tumor and stopped treatment. We are waiting for our new advice. We will continue to keep you updated and keep it as positive and honest as possible.

Thursday, January 8, 2015

Happy 2015!SO much has happened since the last update, I will do my best to summarize and bring you up to current speed without having you spend your beautiful day reading.

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Update

My body had pretty much given up after not responding positively and the cancer was continuing to advance and thicken since last scan. Melanoma as you know by now, does not respond to traditional approaches which makes it so deadly, most die in the first 30 days. My cancer was not responding to the immunotherapy and new trial drugs and instead was acting like we were feeding it Miracle Grow! A new approach was needed ASAP! I went from 2 tumors to more than 15 in a month. We decided to try another Dr. so we traveled desperately to Minnesota and consulted with my sister's doctor, Dr. Marchovitch at Mayo, to learn if there was another approach. We decided to regress and give Chemotherapy a shot. As you may know, Chemotherapy generally has short lived success where cancers adapt and mutates around the drug to continue growing. We took this approach knowing that but also understanding that we may return and utilize previous methods like ANTI-PD1 or another high-tech drugs. The new approach is a combination of Abraxane & Avastin, 2 chemotherapy drugs that has had decent and promising results on Melanoma cancer.

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First WOD back

﻿﻿﻿﻿Recent Results

Besides loosing all my hair and 25# of body weight, scans from December 31st NYE are showing promising results and reduced tumor load throughout my body. The chemo seems to be doing what the other drugs would not for now. We are aware that this could be temporary but it gives us a little breathing room to work on finding a different pathway. Traditionally Chemotherapy is not the great source of treatment because the cancer adapts so quickly around it. But, for now we will take this positive approach! Also, no additional brain tumors! Good news!

Final Thoughts
You have been crazy generous with your time and energy. All of the positive letters & posts, meals, chocolate shakes, people coming to chemotherapy with me, hugs and visits have kept my spirits high and in check. The doctors said I had 3 months to live and something special would have to happen to make it to the new year. Well we made it! Thank you so much! Ill work on keep this blog more up to date.

Sunday, August 24, 2014

Over the course of the past few months, we have been fitting in as much travel and personal time as humanly possible. From Rocky Point, California beaches, unbelievable seafood meals and just tons of laughs with our friends.

We moved the majority of our treatment care

! I had a scan done this past week to verify the radiation was working and track tumor progression. We discovered that the radiation WAS working on 2 major spots BUT all the other tumors has considerable growth and there were MORE. MORE? Could we not just have stable or no new growth? I was decent at CrossFit, but MAN I AM GOOD AT GROWING TUMORS!

MY LEGS: As you know I have been limping. We discovered through MRI that it is bone cancer of some sort and will need radiation at minimum.

VISITORS: What a great week after launching Project Kindness & Free Hugs this past week. I had multiple offers to meet friends, family and new people I had never spoken to before but they were compelled to meet me. Thank you for coming all the way from Texas, California, Flagstaff, Tucson, Minnesota and Montana! LOVE YOU GUYS!

GOOD NEWS TODAY!

We are to finally able to post so positive in this WAR that might be going in our direction. and Melanoma has not consumed me. What cancer has not and will not ever take from me is my SPIRIT & LOVE of helping others! My DEEP LOVE for my wife, family and friends! And finally, find a way to make the MOST out of everyday. This encompasses the entire PROJECT KINDNESS and life.

TUMOR PROGRESSION has been unbelievable! I had a scan done this past week to verify IF the radiation was working and track tumor progression. We discovered that the radiation WAS working on 2 major spots BUT all the other tumors has considerable growth and there were MORE. MORE? Could we not just have stable or no new growth? I was decent at CrossFit, but MAN I AM GOOD AT GROWING TUMORS!

MY LEGS: As you know I have been limping. We discovered through MRI that it is bone cancer of some sort and will need radiation at minimum.

VISITORS: What a great week after launching Project Kindness & Free Hugs this past week. I had multiple offers to meet friends, family and new people I had never spoken to before but they were compelled to meet me. Thank you for coming all the way from Texas, California, Flagstaff, Tucson, Minnesota and Montana! LOVE YOU GUYS!

Randy, Scott (Texas) & Jason

Jason & Craig Howard (San Fran)

Joel, Jason, Erin & Kathy (Flagstaff)

Erin, Brian (Texas) & Jason

Jason, Erin & Jennifer (Tucson, AZ)

Wednesday Night Hump Day Happy Hour (Montana, Minnesota & all over!)

Wednesday Night Hump Day Social: This has gone from 20-30 people hanging out at Goldies Bar to something much larger! Last week we switched and used CrossFit North Scottsdale after classes to host our party. We had over 150+ people come by (and this was by invite only!) to spend a couple hours with us and get a surprise. I am sorry if you did not get an invitation this week. We are working on doing something again as long as I hold up.

Raffle Items: Sounds strange but I raffled off some of my possessions this week. A few watches, a snowboard, jump ropes, t-shirts, Games shorts etc, you get the point. My idea was to give away anything my friends would want and allow them to have their voice heard if there was an item they REALLY wanted. Some were very excited and went hope with collectors gear. LOL. Made me laugh but I love you for wanting it.

"PROJECT KINDNESS" BRACELETES:I wanted something that said "Thank you". I wanted to give a piece of me that would live on. Something tangible. Something industrial. Be Better...TODAY Bracelet's were born. I gave these out to my close friends on Wednesday night and hope to have more done ASAP.

These are EACH hand built by my friend I contracted on the east coast. She is working hard to get these done. I have had a TON of requests to purchase them and your wish is almost done also. We have a web site to launch where you will be able to purchase bracelets and t-shirts ASAP. THANK YOU for the tremendous support.

Monday, August 4, 2014

My prognosis changed today due to the last CT scan and the rapid progression of this deadly melanoma. Dr. Bryce informed me that I have days to a few months left here with you all. He also said I could expect much less because of the concern of having a stroke, throwing a clot or dying while sleeping this week due to kidney failure or brain tumor. It is so uncertain.

My kidneys are not working well anymore, I have a fair amount of edema and I am in pain. The pain can be controlled with drugs but it doesn't address the issue that my body is completely riddled with cancer in every organ. The drugs also cause their own issues.

I want you to know I am not giving up. I want you to know I can be positive AND realistic about my future at the same time. I also am overwhelmed with the number of invitations for lunches and dinners. I appreciate you reaching out and offering support along with trying to help in any way possible. Ill do my best to respond to all your messages but please know I have limited time and energy now. I need to focus these precious hours on Erin and my family.

Project Kindness WILL GO ON. I practice EVERYDAY. Will you?
I will continue coaching as long as I am able at CrossFit North Scottsdale.
I will be more quiet on Facebook and may update my blog as needed.

Saturday, August 2, 2014

So much has happened since the last update I am excited to share. Again, Ill do my best to keep it short and sweet.

7-18-14
One of the first things we did after returning from Cabo was to renew our wedding vows. Our marriage from 2 years ago in Maui was not legal (we didn't file it) so we needed the courts to recognize it. We decided to turn the CrossFit North Scottsdale summer party into a SURPRISE WEDDING PARTY! We did this with 80+ friends present (none of them knew we had this planned) on July 18th at Eric & Robyn's beautiful house in Paradise Valley. Thank you Rinestone Family for hosting!

The evening began with my incredible friend Don Rodie talking about how grateful Erin and I are for all the loving support you have generously given. You funded trips and medical treatments for us the past few months. I then told the story of how Erin and I met, fell in love and were married 2 years ago in Maui. Since it was not legal, I dropped to one knee, proposed to Erin and asked her "will you marry me RIGHT NOW?" She said "YES!" We asked if anyone was an officiate in the crowd and able to perform the ceremony. My great friend Neil, just days before got ordained for this event and even returned early from his family vacation just so he could do this! GREAT GUY! We read our vows we wrote in a rhyming style similar to Dr. Seuss's "Green Eggs and Ham." It was funny and totally our style. We finished the ceremony off with a sparkler canopy and everyone danced to "The Humpty Dance." We also brought in a tattoo artist to finish off our original tattoo rings. Seriously one of the best nights of my life.

7-23-14We got terrible news today and scans showed increased growth and more tumors everywhere including liver and lungs. This is now very serious. My esophagus is almost shut closed from a large chest tumor and my kidney is also almost shut down too. This explains all the pain in my mid section and pancreas.

The plan going forward is to continue anyway with the MK3475 (ANTI-PD1) trial drug and plan to get radiation treatment next week to work on relieving those 2 major tumors. Thank you for all the loving support. Your friendships have kept us positive and healthier through this process. I will make a solid effort to contact you individually.

7-26-14F' it. Off to the Fine cabin (Northern Minnesota)
We grabbed the next flight out of town after our bad news and headed north to see family and say some goodbyes to my Aunt, Uncle and cousins. It was a rough weekend both emotionally and physically. We did make the most of every second, just like the Fine's always do! Cannonball!

"Project Kindness" - 7-30-14
After having such a terrible couple of weeks and bad news around every corner this past month, I decided it was time to enact Project Kindness.My goal is to be a little kinder to people I didn't know (and know for that matter), find a way to spread some love and make people smile without knowing them or their battle. I KNOW there are a ton of people who have battles I know nothing about. I see it in their faces on the 3rd floor at Mayo when I go for treatment. The lady in the wheel chair, the person pushing that wheel chair, the women checking the patients in, the man riding the elevator alone with the tracheotomy tube, the woman sitting alone with the head wrap waiting to be called for chemotherapy. They ALL have battles we know nothing about. It doesn't matter what the battle is, I wanted to find a way to make a positive impact, even if just for a second. So I made a FREE HUGS SIGN and tested it out. My original goal was 100 REAL hugs (from people I didn't know) but I have changed it to as many hugs as I can get before I leave. I have been hugging random people since Wednesday 7/30/14. My friends are also requesting more hugs too. What a great impact this has had, not only on me but the people I get the privilege to hug. I think everyone could use just a bit more connection with random people. Put your phones down, talk with someone, make sure to listen and then give them a friendly hug goodbye. Simple I know, but it is powerful.

8-2-14Radiation started this weekend.
In an attempt to shrink the tumors in my chest in hopes of relieving some pain and regaining the ability to eat, I started a 3 weeks of radiation. I will go to St Joe's 5 days a week for 3 weeks. I also finally got into a proper pain clinic at Mayo to give myself an opportunity to live with less pain. The pain has been debilitating and I was slowly slipping. I hope this works.

Going Forward

I know my fate. We all know our fate. The doctors told me last week an approximate outcome and I meet with my primary Oncologist Monday the 4th for more information. With how aggressive this cancer is, this could be a very quick ending. The PD1 MUST act now.

For this possibility, I ask my friends a few favors.

#1 - Please promise me you will check in on Erin when the time comes. I love her so much and she is an amazing woman. She is strong willed too and wont ask for help. So please make an effort to get to know her more before I go. She is a great friend and could use a couple more girlfriends to hang with.

#2 - Promise me you will stay healthy and go on adventures. STOP & ENJOY LIFE! Take a RISK. Try something NEW. Like I have said since diagnosis: I am not dying today, so make the most of it.

#3 - Project Kindness. The most impactful lesson I learned in this short journey with cancer is we can all be a little kinder. I have been an impatient person, someone with high standards, wound tight, passionate about my profession, passionate about life, a risk taker, I am very loving, sometimes too sensitive and generous all in one breath. This battle taught me more than I can put into words right now but I had a major awakening a couple months ago after diagnosis & prognosis. Don't wait for something like this (or never) to learn to be better. Be a better husband, wife, friend, brother, sister, son, daughter, uncle, aunt & person...TODAY. It does not have to be complicated, simple acts go so far. Be present. Listen. Hug away.

Monday, July 14, 2014

Well I have had a interesting week since I found out my cancer had progressed so quickly. I chose to quit treatment with the drug Yervoy since I developed 14 new tumors in 6 weeks and seek out a clinical trial drug. My friends who work at the Mayo Clinic had encouraged me to apply for a new clinical trial of Anti-PD1 (MK3475) in case I ran out of options. The new drug from Merek, has had better success than Yervoy, but is not yet approved for full use. I am patient #15 in Arizona and understand it has a 40% chance of helping me fight but long term effects and results are not known. It is a big gamble but really it is all I have left. I received the first dose Tuesday July 8th and then took off for a family vacation to Cabo the next afternoon.

I am hopeful but am more ill than I expected. I feel the new tumors when I breathe deeply and may be responsible for some of my stomach issues and all over body pains. I understand why people may use pot or pain pills! I am not eating much or sleeping great, am a little depressed but doing my best to stay positive while waiting for disease regression. Doctors told me I have 30 days to ?? depending on what happens in the next few weeks. Cross your fingers I do not get any more brain tumors or any new liver or lung tumors!

Sunday, July 6, 2014

I will do my best to keep this as brief as possible so I don't lose my OCD friends to their phones.

WHIRLWIND
The past couple of months since diagnosis have been a complete whirlwind ride for us. So much has happened and so many people have gone way out of their way to help us out I don't even know where to begin. So I must first say THANK YOU! I always do my best and hope you know I see everything you have been there for. All the little things from $10 donations from strangers online to dinners, lunches, my friends checking on me daily when I am down fighting, fundraising, posts, shirts, and I could go on. Thank you to my local friends, far away friends and friends I have not met yet. Much love.

TRAVEL & BUCKET LIST
As you know Erin and I love to travel and play. Spontaneous vacations of 2-4 days at a time are our thing. We may do crazy things last minute or just find simple things to do. Most of our travel is within the USA due to logistics of being gone for more than a few days at time but we love it. My amazing group at CFNS came together and started a private fundraiser at CrossFit North Scottsdale to make sure we did some of the things on my bucket list. This was something so special you did for us that is holding Erin and I together more than you know. Love you guys for this.

Def Leppard Concert 7-5-14

PAY-IT-FORWARD
My friend Kelli Howard nominating me for CBS's PAY-IT-FORWARD. They came to CFNS and surprised me a couple weeks ago. Pat McReynolds tried to get me to cry many times but I fought it back like a champion. I wanted to say think you to Kelli and all my friends who came out on that special Friday.

FUNDRASIER & FAMILY VISIT
What an amazing weekend June 21st turned out to be! We had almost 80 athletes come together in the final hour for our first WOD Crawl which helped to raise awareness of Melanoma while raising medical funds to fight. Thank you to all the new people I met over that day!

I am also so proud of all our athletes from CFNS who had never competed. You came out smiling and kept smiling through a full day of workouts. So great!!

Thank you to our friend Josh from Power in Motion CrossFit, Brenda & Chad from Infinite Strength CrossFit and Tiffany from Wildfire CrossFit (along with our own affiliate CrossFit North Scottsdale - Lon & Mike) who came together quickly to host and run workouts for every scale and athlete. It was a total blast and was very well organized. Thank you to my business partner, Shane Edrington. He came through and got it done!

Thank you to my family (Kathy, Robyn, Keith, Hannah, Penny, Luis & Jordyn) for coming all the way to AZ. We had a blast. Love you guys!

SCAN RESULTS 7-2-14
What you have been waiting for.

6 Weeks into my treatment (2 doses of Yervoy done) to stop this malignant Melanoma, I requested a new CT body scan due to the appearance of 3 new lumps. My great friends Stan and Maryanne along with my wife Erin came with me to support whatever news I was told.

News was not favorable. I have cancer almost everywhere.
Thyroid. Ascending aorta. Pancreas. Right & left kidneys. Right & left groin lymph nodes & right axillary lymph nodes. 13 new tumors. Many of them are 1-2" in size. I can feel them when I breathe deeply and swallow. Along with a few superficial ones around my body. FU CANCER! This doesn't yet include my brain since I wont have another MRI for a few more weeks. We hope nothing is there!

I am unfortunately not responding to the Yervoy but still took the 3rd treatment last week. I was encouraged to look elsewhere for help. The best option doctors tell me is ANTI-PD1. This drug is available at ONE place in Arizona right now. MAYO. But it is not "in-network" for insurance so I have applied for an exception to get this started ASAP. The process takes 7-10 days. Keep your fingers crossed I get approval Monday or Tuesday this week as they are on stand-by waiting. I may just walk in and use my medical fund you raised for me to get started ASAP! Seriously.

MOVING FORWARD
How do we move forward and smile everyday? How do we deal with the devastation that my body is failing me? I don't know, we just do. We say "we have today, lets make it the best".

Erin and I are faced daily with thoughts of the "what ifs" and I am mentally facing what needs to be done and arranged in as little as 3-6 months. This is a huge task that does not mean I have given up, it just means I am prepared for the worst and hope for a better outcome. I am pragmatic and need to have this ready, for me, as to not leave a heaping pile for Erin. I personally need to do this before I get another brain tumor or don't feel well enough to take care of it. This MAY NEVER happen, but most likely will. Malignant Melanoma is a nasty cancer that does not discriminate the weak from the strong or the rich from the poor.